Tag: autoimmune diseases

As of right now, even sticking with strict gluten free, I’m right back to feeling sick all the time. I’m not sure if it’s dairy or if there is something else I’m now sensitive to but the Whole30 is the best way to find out from what I can see.

I have failed multiple times, but I’m sure I should be able to commit to 1 simple month of whole foods. I have checked out so many recipes, it will just involve making my own birthday cake since my birthday is in January.

I just signed up for a holiday HIIT 3 days a week program. HIIT workouts have always been my favorites and with some really busy weeks, the 15-17 minute workouts should be feasible. My two year old has enjoyed joining me doing the Stronger workouts (livestrong website) and she’ll love joining these as well. I’m not trying to set any kind of New Years Resolutions, those are never kept, I just prefer starting things on the first of the month- it’s easier to track progress.

Since I have so many DIY ideas, crafts and converted recipes I decided to create a smaller site and Twitter account to share those on. I’m no longer posting recipes and such here and I’ll be doing updates towards Nano and during November on that blog.

No matter how much sleep I get, I can’t seem to feel rested. I feel drained all the time, my brain is so foggy I have officially quit joking about being an air head.

My mood swings from depressed to anxious- every time I start to think I have some mental illness, my labs come back.

The depression is deeper than I ever felt- as an outcast teenager, when I lost my grandma, lost my dog or lost my child- I had situational depression all those times- never this deep. This depression is unrelenting and feels like I’ll never be able to get up. It makes me feel like no one cares, that I have no one- my kids would be better off and so would my husband and my parents- it makes me feel like I just need to isolate myself. Every time I start to ask my doctor for help- I get my lab results.

I feel nauseated, my stomach bloats out, I have to run back and forth to the bathroom- or I get the opposite.

My palms start burning to the point I can feel the heat radiate, or the opposite and even at 90 degrees, I’m shivering.No amount of blankets can help me warm up and no stripping of layers helps me cool. Heat is worse- it makes me overheat to the point I’ll start to feel like i have heat exhaustion. I have got heat sick just from hot flashes.

I don’t know what’s worse- the crying spells from the depression, the panic attacks from the anxiety that come on with 0 warning, the fatigue that NOTHING helps, the digestive symptoms, mood swings or the fact that people look at me like I’m faking it all. The fact that it’s an invisible illness that makes me feel all this.

It’s never going to go away but you can’t see it. You don’t see my mood swings- until the symptoms get severe- I’ve been learning to hide them.

You don’t see the cold or hot flashes- unless I start sweating

You don’t see the depression, anxiety or the nausea but it’s there. It’s real and I’m ready to give it up. I don’t want Hashimotos anymore. I don’t want to keep having to feel this way in between dosage adjustments. They started me at 25, I’m now up to 88 and my appointment is next week- I’m in full swing and can tell my levels are off. I was going to go to the ER, but there is no use- ERs can’t handle chronic- they treat temporary problems. I really wish I could figure out how to deal while I’m in between doses because this isn’t living.

Imagine the most exhausted you ever felt. Maybe you stayed up all night cramming for a test in college, or a state board test after finishing nursing/beauty/etc school. Now, imagine feeling that way despite sleeping for 10-12 hours a night. No matter what, you can’t shake the fatigue. Now you’re noticing bald spots forming and your hair is getting noticibly thinner. Suddenly, putting your hair up in a ponytail isn’t an option- a ponytail is the size of a normal person’s pigtail.You’re dealing with fatigue and hair thinning- now you’re emotions are falling apart. You keep feeling anger build up over nothing- now you’re crying because your dog barked wrong and you think he’s mad at you. You’re crying at the drop of a dime, your hair is falling out and you’re always tired. You think it must be that time of the month but just to be safe, you go to the doctor. They poke around and find a lump in your neck so they send you for a biopsy. The biopsy comes back negative for cancer, but an ultrasound shows it’s a cyst. You’re anxiety flares and you suddenly can’t sleep, you’re always cold and always shaky. You go for further tests only to find out it’s a large cyst inside your thyroid that is causing your thyroid to over produce TSH and it’s making you hyper- but at times it’s making you hypo. You set up your surgery to have the cyst removed and in that time are put on heart medication and two weeks before the surgery, you’re put on medication to kill your thyroid function- because having the surgery while hyper could throw you into a thyroid storm- where you go severely hyper and if it’s treated can lead to you dying.

By this time, you feel like a wreck, your life is a mess and you’re doing your best to hold everything together so it doesn’t cost you your job, family, life or anything else. You figure the surgery will fix everything.

You go in for the surgery and it’s an easy recovery and you’re quickly back at work. One day you wake up in a bad mood. After not shaking it, you just start crying for no reason then you’re shaky, hot, cold, hot, something sets you off so you start screaming and then fall into such a deep depression you start wondering if you should even be alive. That’s the point you decide to get help- they test your thyroid after finding out you have Hashimoto’s and thyroid surgery- sure enough, your TSH is off. They put you on medication and it works- you’re back to normal. That normal feels so good you forget everything else- until just a few months later, you’re right back to bad.

Keep going through that cycle- every few months, your thyroid is thrown off and they have to readjust your medication and that describes me for the past two years- just when I go back to normal, I get thrown off.

For me, it started with a positive pregnancy test. I set up the appointment to get my pregnancy confirmed with my OB and his nurse checked my neck. She found a lump so he sent me for a scan. The scan came back showing I had a nodule inside my thyroid so I had to have a biopsy- that came back inconclusive but the panic attack I had during the test (huge needle going at my neck) possibly changed his mind about redoing the test. I had to wait until the end of my pregnancy to be put on anything more than a heart medication to slow the palpatations down. In that time, my thyroid went from high to fine and back to hyper. I was dealing with severe (almost disabling) anxiety followed by severe depression swings. They held off on my surgery because I was breast feeding and they didn’t want to have to keep me from nursing for a little time. When my baby was around four months, we decided on the time of the surgery. I started a new job that had me working nine hour shifts and required one month notice for days I needed off. I naturally dried up working such long shifts (I was afraid of asking to pump but did manage to go home during some of my lunch breaks to nurse). One day, I got a reminder of an appointment with the man who was going to do my surgery so I figured I was going to get my appointment date and set up for surgery. When I was in the room during my appointment, the nurse came in and asked how I was feeling, then asked how I had been after my surgery. I told her I hadn’t had the surgery yet- I thought that appointment was to set up my surgery.

That day, I set up the surgery and a month later, I took a week off work to have it done. They put me on Levothyroxine 25mgs. At first, the 25 was fine but soon I went back to depression and anxiety swings. I ended up going to the ER, I was feeling so bad and they tested my thyroid- once again, I was hypo so they upped me to 50. I was fine for a bit, then one day at work, I was standing when I suddenly got really light headed. I tried to shake it off since I normally feel that way. My hearing faded- everything felt like it was distant, everything was getting dark and I developed tunnel vision. Suddenly, I felt a pain in the left side of my chest followed by my left arm going numb. I started feeling like someone set my left side on fire- it was so bad, I was sweating and in pain from the heat. My right side went cold- like, frozen cold. I was sweating profusely and so cold it was painful. By that time, I was slurring and had my husband come to pick me up. At the ER, they checked my heart rate for 10 seconds and told me it was an anxiety attack. They did check my thyroid levels, which once again, came back hypo. My thyroid was the only thing that came back bad and my doctor upped me to 75 (what I’ve been on for a year now)

I was told that episode sounded like a blood sugar seizure, and I’m no stranger to those symptoms when I need to eat but I know it wasn’t an anxiety attack. I was told that several months ago (and nearly a year after it happened and was dismissed by the ER staff, so they couldn’t test and confirm it)

It took them about 1-2 years to get my dose right for longer than 2-3 months, but lately my tests have been coming back in the normal range.

Hashimotos Thyroiditis is one of two autoimmune thyroid diseases, also the most common cause of Hypothyroid disease. Hypothyroidism is when your body produces too little of the thyroid stimulating hormone (TSH). It’s caused by an immune attack on your thyroid and the only way it will go away is either having your full thyroid (I only had half) removed or when it completely destroys your thyroid leaving it “nothing but a lump of scar tissue” (as per my thyroid surgeon).

It causes fatigue, depression (and anxiety- despite what some professionals say), it will cause fluxuations in your thyroid that go from hyper to hypo before you get stuck on hypo because it’s done so much damage, your thyroid can’t function properly. It causes hair loss, dry skin, constantly feeling cold, weight gain and difficulty losing weight. It also can throw people into early menopause. It can hurt fertility and unregulated, can cause thyroid issues if you’re pregnant.

It’s genetic, so if you have it (or any autoimmune disease) your kids are at higher risk of developing autoimmunity. It’s fairly commonly co-morbid with Celiac (you have over 50% likelihood of developing Celiac with Hashimotos and vice versa). It’s recommended to try the Autoimmune Paleo for 1-3 months, then add things back to see if any of those foods help or hurt- I haven’t tried that diet, but I have done elimination with gluten and dairy- both are problems for me personally so they’re both almost fully out of my diet (very low dairy and gluten free)

It can take you from healthy to severely sick until you get the diagnosis fairly quickly. My progression has been over the course of two years. My hair used to be normal but course. Now it dries like straw and if I move it, you can see my scalp. If I pull it back, it’s the same thickness as half a normal pigtail. I’m always tired. I have 2 kids, an Etsy shop (really, two shops) and a day job in retail- so some fatigue is normal, but there are times I’m useless after I get home from work. There are other times, I’m great but it’s taken them two years to get a dose high enough for me to function and I changed my diet. I’m currently eating gluten free, I’m weeding out dairy and am wanting to switch to a full Paleo diet since it’s recommended.

I know your metabolism takes a slight hit at 30, larger hit at 35 and every 5 years or so keeps shrinking. I’m still heavier than I was pre-kids and reality is hitting me. I knew I no longer had my pre-baby body, but will I be able to go back?

I accepted the fact that pregnancy made my hips more of a problem area than they already were. I only wore a larger size (11-13 in high school) for that reason, but had an hourglass figure. When I dropped to a 14, I tried on some 17s and couldn’t get them past my hips. That was when I read that juniors and adult sizes are made different (1,3,5, etc are juniors. 2,4,6, etc are adult). Juniors are made narrow in the hips where adult jeans are made wider in the hips.

I do know that with Ehlers Danlos, collagen is affected and where it makes your skin stretchy, it seems it may be harder to just bounce back. My scars fade but they still look strange when they heal. I don’t know much else about EDS but I do have an appointment, not only with a genetic specialist, but a specialist who lives with EDS herself. But that’s in a little bit. Right now, I’ve been researching trying to find foods that can help, workouts good enough to help lose weight and tone up but also safe for Osteo and loose joints and anything else that could help me with shrinking back down.

In the past 2 years, I’m down from 220 to about 170. I’m down from a size 20 to a size 14-16. I still have 40lbs left and hoping to get down to a 6ish or 8, maybe and I have 5 years in my mind to do it. If I can get down to my goal, fix what I need to fix diet wise and perfect my ingredient reading I should be able to maintain despite my Hashimotos. I’m seeing that even thyroid isn’t as much of an excuse as people use it. I dropped 20lbs in 4 months on a good dose of thyroid medication and cutting 1 ingredient out. I’m almost 1 month back to the normal (gluten free) lifestyle and finally feeling back to how I was feeling. I just had my thyroid levels tested again and they were perfect.

Right now, I’m trying to buy less processed foods. I have quit drinking Mello Yello (but I did switch to Diet coke for the time being), I’m eating 1 grain meal a day (if that) and the rest are cooked or salad. I do need to cut condiments and I still am drinking my Starbucks double shots (1 a day), I also started to notice my sugar drops when I eat potatoes so I’m switching to sweet potatoes.

The problem is when you have multiple diagnosis’s with several recomendations for diets. Where I have obvious issues with gluten, gluten free is needed (unless I want to spend all day cramping and in the bathroom), I had the diabetic low glycemic diet recommended to me for the reactive hypoglycemia. Cutting everything that was recommended to me feels restrictive. It also makes my OCD mind feel like I’ll be depriving myself and feels like it’s a black/white situation instead of- eat this way and you’ll feel great, eat that way and feel like crap.

I’m working on disassociating food with pleasure or anything related to emotions and trying to associate it with fueling my body and nothing more. Mindfulness helps that. Taking time to savor what I eat and pay attention to it is what I’m working on. Salad tastes great, so does fruit. Sugar and snacks that are heavily processed taste like chemicals but are an addiction- I’ve read all about sugar addiction and cold turkey is the way to go with kicking it. I’ve been thinking about trying a 1 month sugar free diet to try to break it. Just not sure if I have the will power currently. I will start it at the beginning of a month this year, though. Just have to build up and do further research into it to go in armed instead of half assing it.

In my picture, I was 18. I was constantly working out but didn’t know half of what I know now. I was also healthy.

We were told to keep her away from dairy and her diarrhea (reason we took her) was likely caused by a virus. Well, we took her off dairy and her diarrhea cleared up. We reintroduced it many times and the very last time my mom attempted to give her cows milk, she spit it out and didn’t want to drink it. Each time it has given her diarrhea. It’s lasted way more than 10 days (did test positive for a virus- this specific one lasts 10 days and it’s been well over that and she still gets diarrhea when she eats yogurt, most cheese, ice cream or milk. She’s also developing a taste for my gluten free snacks instead of normal. I have read picky eating can be a sign of a food intolerance. We are pretty sure lactose intolerance (I am) because the diarrhea has been a recurrent issue her whole life. We have an order to have her tested for Celiac due to my medical issues, her sisters gene and her symptoms.

If she isn’t able to to back to cows milk, it’ll be all three of us women in the house who don’t drink it. Her older sister could easily live without dairy and I’m lactose intolerant myself.

This is a whole lot of fun going through the tests, dealing with the diaper and trying to figure all this stuff out. Even with the medical help, it is still too long a process.

I have been with my husband almost 8 years now. Before he and I met, when I was younger, it would take me over an hour just to leave my house. My hair, make up, clothes and everything had to be perfect. After we had our first baby, I had an extra 60lbs (went from 125 to 198 at the end of my first- complicated- pregnancy) and I started stress eating (before that, if I was stressed, I couldn’t eat). I managed to lose 10lbs down to 180 but stuck. I did workouts sporadically but the stress turned to fatigue and even laziness.

With my second pregnancy (the one we lost) my weight stayed the same after the baby was born and I was too depressed to really work on it.

By the time I had my third, I gained up to 220- higher than I ever weighed and was a size 18. This time, I was more active but my thyroid went into hyper due to the toxic cyst and I lost 30lbs in the first 6 weeks and another 20 recently. Now that I’m down to about 170 and a size 14/16 I’m gaining the motivation to continue.

After I had my first baby, I continued with my hair, make up and skin routine but over time, lost it.

In the past few months, I’m working on changing myself. I realized a while back I let myself go so now I’m working on undoing the damage before it becomes harder.

My daily skin routine now involves pre cleanse and cleansing, sometimes exfoliating (not every day- usually 3 times a week to every other day), spraying my face with either rose water or Dermalogica’s Multi-Active toner, moisturizer, then I’ll put on a mask 1-2 times a week. That’s my evening before bedtime routine. My morning routine is the same but after the moisturizer, I’ll put my make up on. That full routine can keep my eczema from acting up too bad. I have found that to keep it down, exfoliating and moisturizing is key.

I’ve studied skin care professionally (I’m a licensed skin therapist) so keeping my skin next to perfect is key. Luckily for me, when my eczema breaks out, it’s mostly still skin colored but the itching does me in. I still get compliments on my skin on a daily basis- I get rid of zits immediately, don’t have black heads and you would have to look at my skin under a magnifying glass to see my pores- my skin has been my pride and thanks to that, I still look as young as I did when I met my husband. I’m heavier now, but I’m also working on losing that (I did make it from 130 to 220, I’m back down to 170 and working on losing the last 40lbs if possible). I’m down 50lbs from 220 to 170 from two years ago (hit my peak weight at the very end of my last pregnancy- but there will be no more pregnancies so I can focus on losing the last bit)

I’m also looking at what types of workouts are best for people with Osteo arthritis and Ehler Danlos Syndrome to try to get my body toned back up.

I’ve been working on trying to get back to how I was in college. Back then, I was active and felt great. I also looked better. I’m not sure how to handle my thinning and really dry hair (the wrong shampoos grease my hair up and make it look wet, when it dries it dries like straw. It’s hard having greasy skin in that one area of my body but then having dry hair. The thyroid issues don’t help at all.)
The selected image is what I looked like in October. I’m hoping to get back to a slightly older version of what I looked like when I met my husband. I’m not trying to look like a teen again (or very young adult) since I’ll be 30 this week, I just want to be about the same size, weight and to feel good again.

The first picture was taken right before my husband and I met (same week)

The one with the hat was shortly after we got together, before I got pregnant and the third was our first Christmas with our new baby (she was 9 months old)

I cut gluten out of my diet again. This time, I’m better educated than the first time (I’ve done 3 elimination diets over the years- all three times for different amounts of time and all 3 times I had benefits that were noticeable). This time, I’m doing it after being suggested by multiple professionals and even told to act like I have Celiac and avoid it.

The problem with not being diagnosed by a blood test, but being professionally diagnosed as having Gluten Intolerance is what to say when I am at a restaurant. I cross contaminated myself once by picking salad around the croutons, getting crumbs and ending up running back and forth to the bathroom all morning the next morning. I have read more than one example of people being purposely contaminated by self righteous waiters who assumed they were following the trend and giving them regular food instead of gluten free food so what am I supposed to say when a waiter or cashier asks why I’m wanting the gluten free menu? Do I lie and say I have Celiac? From what my doctor told me, what I did (eliminate it and readd) that’s enough for him to prescribe a gluten free diet to his patients since he has dealt with so many false positive and false negative Celiac blood screens, he no longer uses the tests to confirm or deny the results.

I did find major benefits when I cut it in the past (over the summer from July to November) and reverted back in November and December. Because of the results I got when I cut it in the past (lost 20lbs in 3 months, got rid of my IBS morning diarrhea, was able to drink coffee again with no issues, had more energy, felt better, 0 arthritis flares- just to name a few differences) my doctor told me to ignore the negative Celiac panel and live like I have Celiac Disease since I do have autoimmune issues and gluten itself does play a role (I went on a processed gluten free diet- to avoid feeling better due to eating healthier foods- I ate a ton of gluten free pasta and didn’t cut dairy)

I guess when I get myself into the full swing again, I need to look at other things. I ate a lunch of baked fish (no breading), baked potato and mixed vegetables and my blood sugar dropped within an hour of eating. I have been told to eat sweet potatoes instead of white and to avoid white everything (flour, bread, sugar, etc) due to my reactive hypoglycemia. I’ve also been advised to stay on the low glycemic diet as well as cutting gluten (and not by medical professionals, but due to self testing and elimination diets- diary. I haven’t been tested, but I did find out I’m lactose intolerant as well)

I really wish I could gain the self control to go on the Autoimmune Paleo diet. It’s only 30-60 days and would probably help more than this random trial and error I’ve been doing.

On the other side, my healthy daughter (2 years old) has just had a stool sample taken in and has an order for a full GI panel as well as the Celiac panel. She’s had diarrhea and we have eliminated dairy for the past 2 weeks. We have tried giving her regular milk (got diarrhea again) then we tried giving her cheese and other dairy items- once again, got diarrhea again so it does appear dairy at least is an issue but since we’ve been dealing with more diarrhea from her than just the past 2 weeks (and a rash that comes with it) and our older daughter had a positive gene test for the Celiac gene, it takes around 2 years for an autoimmune disease to start showing, I guess it’s time to get her screened for the first time. Our older daughter has to have the screening on a regular basis and she probably will as well. Once I get the gluten free diet fully down for myself, I may start looking into talking to the pediatrician and testing both of my girls (closer monitored to make sure they don’t miss anything needed)

I truly don’t understand why people want to go on this as a diet just to “lose weight” or “fit in” with other people. It’s more expensive, more restrictive and a huge pain when everyone around you is having cake and you’re having to say “no.” I kept re introducing it as a way of trying to convince myself I had no actual symptoms from it so I could go back to eating normal foods- unfortunately, I couldn’t ignore the symptoms and felt sick 100% of the time (even a few times I didn’t realize I ate it). I’m no longer eliminating it as a trial and am now avoiding it and doing the research to “live like I have Celiac” since that’s what my doctor told me to do.

I do have to wonder if beauty and hair products also count- I have Eczema on my hands and face and Seborrheic Dermatitis on my scalp. I’ve started using sensitive skin cleanser (Dermalogica) and moisturizing facial masks for the past few weeks and I LOVE Hand Food from Ulta (hand lotion and scrub) for my dry hands (thanks to the cold weather, Hashimotos and Eczema- fun combo)

The Seborrheic Dermatitis has been an embarrassment for years. I’ve had it since I was a child and it looks like I have dandruff or worse- but it’s just dead skin cells. When people get close enough they can see it’s dead skin but I’ve had 2 managers tell me I needed to get rid of it. If it was that easy, it would have been gone years ago.

I use T-Gel daily and that keeps it from itching, unless I start sweating. I was told it was SD but I’m pretty sure it’s Eczema since I get Eczema outbreaks on my hands and face anyways.

My featured image is from when I was 24, a new mom and the toddler was my oldest- who’s now almost 7.